Compassion

One of the things that concerns and confounds me about the world is the seeming lack of compassion people seem to have for one another. Not just in the world of food allergies but in the world at large. It seems as if someone senses their own wants are at all compromised by the needs of others they act with outright animosity and anger. Whether its sharing the road, the grocery store aisle, or space in the world in general. I don't know if it is the area I live in but I have begun to be very worried about the human race due to the animosity I feel around me everyday.

It's the lady at the pool that practically pushes my child aside to go up the steps. No excuse me or even eye contact even though we are the only other people in the pool. Its the woman at the grocery store berating the lady waiting in her car for her grocery delivery because she has been parked there too long and the other woman wants her to move. No, please could you move up or can I get in here. Just a barrage of verbal abuse.

It's also the lack of compassion from others when dealing with those with food allergies. Its the parents of another child in my son's class. As the teacher is explaining that there is one child in the class with severe food allergies the parent spews out "So everyone else has to suffer because of one child." If he had let the teacher finish he would have realized that her comments would have ended in "You can still bring what you want and the parent of the food allergic child will provide a separate snack."

It's the same teacher a month later refusing to change her plans to make cookies using both milk and eggs in the classroom, even though I have offered to make cookie dough for the whole class, because "We do not deprive the other children because of one child." They had made no other plan for my child, he was just not going to be allowed to participate in the cookie making.

It's a woman in one of my former playgroups that would continuously bring unsafe snacks not just to our playgroups but to my house. An eggy milk, based dip one time. A snickers cheesecake to another. That time the playgroup wasn't at my house it was at another members house who had just found out her son had a severe peanut allergy. I could never understand if she just didn't get it or just didn't care.

It is the Washington Post printing an editorial response (in very large print) to an article about peanut free sections at baseball games. "I'll give up my peanut butter and jelly sandwich when you pry it from my cold, dead hands."

I realize that all these incidents may seem very minor. But I have dozens more. They one by one add up and make me wary of people's reactions to me, to my children and to their food allergies. I honestly didn't make up their problems or cause them or want to even burden YOU with them. But we all live in this world together and we all, in one way of the other, too often look the other way and say "That is not my problem." We lack compassion for another person's burdens and instead focus on how their problem encroaches upon my rights.

I am not asking you to change the way you live. But if you are my neighbor, I think it is kind if you look me in the eye and say hello. If you are my son's teacher, I expect you to make him feel included and keep him out of dangers way. If you are parents of other kids at my children's' school I wish you could see us as part of your community and not as "the child who deprives others."

Just walk a day in my shoes. I am striving to walk a day in yours.

Working FAM

Like I said, I went back to work this past year. I knew it would be hard. But I didn't know it would be as hard as it was. There were points in time this past year where I really thought I couldn't do it. That I was going to crack. That I really was in over my head.

I also might have over scheduled myself. Beside being enrolled in an American Montessori Society training program and working full time I was the treasurer for our HOA (thankless job) and taught my son's 1st grade catechism class (good Lord do first graders like to chat).

I found it particularly hard on the food allergy aspects of our life. We don't eat out so food prep sometimes seemed insurmountable. Both Max and Owen were in school which is full of "fun" food laden events many of which I was informed about the day beforehand. This was troublesome to me on a few fronts. 1). I work at the same place they go to school. It would not be impossible to give me a heads up more than 12 hours before the event. 2). I spent many blurry eyed evenings making baked goods. I began to feel resentful and angry but with food allergies it is hard to know where to direct that resentment and anger. 3). Conflicts particularly with Owen's teachers over food allergy issues led to a stressful working environment for me as they tended to see me not as a parent but as a co-worker.

We are halfway through the summer. Halfway to going back to school (for the kids, I completed my training) and work for me. And I'm not looking forward to it. I LOVE Montessori. I am a really good teacher. But it was a lot this year. I don't know if I can do it again.

It can only get better right?

Here's One For You

Picking up Max from school one day last week, he said to me "Mom, we are going to go eat at a restaurant!" Stop in my tracks. "What?" "My class. We are all going to go to a restaurant!"

I turn around and head back to the teacher. With a big smile on my face and sweetness in my voice I say, "So Max tells me you are going to a restaurant." The teacher replies yes. "We've never been to a restaurant." I say. "Oh!" she seems surprised. I ask where they are going. She says she looked at the menu and it seemed there are things on there he could have. We discuss cross contamination. I end with telling her I will need to call the restaurant to see if they can safely provide Max with a meal.

Damn it. What do I do? Max will feel left out if he can't go but I don't know if I trust a restaurant to feed him. I'm also perplexed by the teachers' decision to do this without talking to me first. As a school they have been great with Max and brought him a long way academically. They support him as a student in unbelievable ways. And for the most part are very sensitive to his allergies but this is disappointing to me. I little more conversation with me would have been nice.

Two Posts in One Day

I had David ask how proactive we should be regarding the sunflower seed allergy and daycare/preschool. Though he broke out in hives from contact with Sunbutter when he was 18 months his test score is extremely low. As parents are now trained to use Sunbutter instead of peanut butter I wondered what I should do about preschool. Our Dr. said Sunbutter should be banned from the classroom as well.

I'm not sure if I should take this hard line. We want other parents to be empathetic to our children's health needs however when is it crying wolf? With low scores (we're talking .37), no history of anaphylaxis from or even ingestion of sunflower seed, do I really need to have it banned from his classroom? Am I going to ban milk then? His RAST for that is 8.32. Or egg, for which he has needed a previous epi? Is this really fair?

If it was just a preschool where he was going two hours a day for a couple days a week I could see drawing a hard line because this wouldn't be too much of a hardship to go without for a couple of hours. Kids would go home and have whatever they wanted for lunch. But Owen will be at the school where I will also be interning next year. He will be in another classroom until 1 and then with the nappers until 3 when I get him.

What is fair to Owen? What is fair to the other children?

Where is the Epi-Pen

I knew you all would marvel at the lost Epi-pen and you know what I still haven't heard a word from the nurse. I will say this was the back up Epi. I had already picked up the one from the classroom. So if something had happened, there were two Epi-pens at school. Also, though I know this is probably not legal, there was a stack of Epi-pen Jr.s in her cabinet.

In my last post I said the worst case scenario was Max would be at home for a couple weeks. I should have said that was the BEST case scenario. The WORST case scenario would have been me homeschooling him for a year. Seriously, how do you homeschoolers do it? You must have incredible relationships with your kids. I'm trying to keep Max busy each day, working on handwriting, reading, spelling words but having a hard time balancing Owen's needs and Max's needs. Ahhh! Calgon, take me away...

Breaking Up Is Hard To Do

When I don't post I start getting phone calls. From my best friend, Laurae (HI:) to my Mom, they want to know why I haven't posted anything. Well, my mind has been consumed with Max's school situation. Almost totally non-food allergy related. We've been talking and pondering and worrying and crying (okay David isn't crying, that's my job). And today we finally did it. The correct people were notified in the correct ways and I went to the Catholic school in question and gathered his things. Max is upset. I am upset. Even Max's teacher, the non-warm fuzzy one, was distraught and actually hugged me!

We know this is the right thing for Max. The school and us just didn't "fit" and it wasn't going to get any better. I just couldn't figure out what was bothering me so much about the whole process and the other day it hit me. I was breaking up with a school! The relationship had faltered. I'd had such high hope that this was the one! Then things soured and I had to call it quits. I had to break up with the teacher, the principal, the woman who runs volunteers for lunch duty and the woman who runs volunteers for "Littlest Angels" as well as the school nurse. I have always sucked at breaking up with people! "It's not you, it's me." "Yes, we can still be friends, see you at mass." What makes it worse is I don't have a back-up boyfriend (school) completely lined up. Worst case scenario is Max is home with me for the next week and a half.

So this is the only food allergy component. When I went to break up with the school nurse (who also hugged me and whom I really do like), she couldn't find Max's Epi-pen! I actually left without it.

Reading for Pizza

There was an article last week in the Washington Post about local schools trying to limit the amount of food used as prizes. It was ironic because in the same the same week I found this in our Kindergarten handbook regarding encouraging reading.

"Every time your child has read 10 books he/she will be rewarded with a personal pan pizza from Pizza Hut!"

Excuse my sarcasm but Oh joy! Just what the diary allergic child wants! A personal pan pizza from Pizza Hut!

I have emailed the teacher (in a honey not vinegar sort of way) to ask what alternative she might be offering Max or if I should come up with a prize myself.

Strength in Numbers

The surprising thing that came out of "being the honey" regarding Mrs. S. birthday celebration on Friday is that I found out there is another child in the class with just as many allergies as Max and perhaps then some. I knew there was another peanut allergy in the class as there are two epi-pens in the classroom and I knew that Max sits next to a boy at lunch who has an egg allergy. Turns out the two are in the same family. Twins! With food allergies! Boy and girl. The girl is allergic to peanut, tree nut, egg, soy and, I think, shellfish.

I talked with their mother on the phone. It was humbling and relieving and sad and GREAT to talk to her. And the best part was that the class parents turned the whole food thing over to us. And Ms. S. said she would prefer fruit for her party. So that is what other allergy Mom and I are providing. Fruit. Perfect.

On another note, a friend of mine who has been a long time reader of my blog, recently joined the food allergy club. I know she never thought she'd be here. Her son recently tested positive for peanut, almost all tree nuts, egg and corn. I know she is having a hard time. It's so hard to walk in these shoes until you have them on. I know she wants reassurance. So, I can't tell you that your son will outgrow any of his allergies. No one can tell you that. You didn't do anything to cause them and you couldn't have done anything to prevent them. Take those thoughts out of your head. But you can do this. You and your son are stronger then you ever imagined. I know adults with food allergies and parents of adults with food allergies. They have made it and turned in to great, strong people. You and your son will be there someday. In the meantime, grieve and learn and lean on some people and educate and don't be bitchy like me. And some day you will be giving this same advice to someone who has been newly diagnosed.

Welcome to the club. Sorry you had to join.

Being the Honey

I have been a bitch lately. Lashing out at people before giving them a chance or walking in their shoes. Ever since Max started school this year I have just been in a tizzy of worry, clouding out all rational thought.

I don't know how many people have said to me lately "You'll catch more flies with honey than vinegar." And I know it's true. I was just saying to someone last night that I am going to try to "be the honey."

So today when I got an email from the class parent saying they wanted to celebrate Ms. S's (Max's teacher) birthday and were looking for suggestions for what to serve and that they probably couldn't accommodate food allergies so we with such problems would need to provide something else, I felt the heat rising from the pit of my stomach but thought "be the honey." I replied I would be thrilled to bake something for Ms. S.'s party. Chocolate cake? Oreo cookie cupcakes? Cookies? Muffins? You name it I can do it. I felt better about myself.

The reply I got was "Thanks for the offer. Can I get back to you when I find out about the other kids food allergies too?"

Be the honey....
Be the honey....
Be the honey...

Conference Fall Out

The teacher is strict and stern. Not a lot of warm fuzzies floating around.

Max is truly being a disruptive turkey.

Conference Tomorrow

Now I'm more nervous. She wants the school counselor to sit in on our meeting. What does that mean?

First Week of School In Review

From a food allergy perspective last week went fine. The nurse actually called me the second day of school to see if I had any concerns. She said the girl who sits next to Max brought a peanut butter sandwich (for snack) the first day so they were going to talk to her parents and see if this would be an every day thing. If so they were going to switch seats. There is one other peanut allergic kid in the class so I don't know why they just didn't sit them together to begin with. There was a birthday so I sent in a cupcake. The teacher has provided me a list with all the birthday dates for the year.

I was more anxious than I think I was acknowledging. This is typical for me. I felt horrible all week. My stomach hurt. I generally felt on edge. Just dropping him off the first day was hard. But I didn't cry until Friday morning when the teacher asked if we could set up a conference because Max was having trouble "socially". I really think she means behaviorally. Apparently he was doing some pushing in line. I'm not surprised his behavior is less than perfect. He was testing everything last week. Throwing a fit when I asked him to set the table. Refusing to stay in his bed the night we had a babysitter. (He was up at 10:30pm when we got home.) He is a child who is terrible in transitions and likes to test and re-test to see how far he can take something. However, after just 3 half days of school was his behavior bad enough to warrant a sit down conference? My mind immediately went to dark places. With multiple life-threatening allergies, he's probably already not a favorite in the teachers mind. Add on a possible behavior problem and I fear a private school might suggest he's not a "fit". My husband thinks I'm being silly and after a weekend under my belt I'm looking at the situation from a different angle but Friday morning I went out to my mini-van and cried.

Tomorrow we start full day and car pool. They will have lunch at school as well as snack (all provided by parents). So we'll see what this week will bring.

The Day Has Arrived

Tomorrow Max starts at his new school. I left last week's teacher meeting more nervous than when I went in. I had high expectations as the administration and nurse had been saying all the right things. Tables are washed after snacks and meals. Hands are washed before and after eating. The Epi-pen would be kept with the teacher at all times. The nurse is there full-time.

I got nervous though when right after we sat down, Max's new teacher (Mrs. S.) asked, "So he is allergic to peanuts. Does that mean peanut butter and things with peanuts in them as well?" I thought "Oh no, she doesn't quite get it."

"Do you want his place at the table washed before he eats?" she asked. I said I thought tables were already washed after snacks and meals. The other Kindergarten teacher (Ms. G.) spoke up and explained what they did last year. She had a child in her class the previous year with multiple allergies and was able to go through the table and hand washing process in detail. I added that if people didn't wash their hands Max would remind him. I explained Max's awareness of his own allergies and his defensiveness which can come off as being rude.

When we got to Max's milk allergy Mrs. S. asked, "So what about yogurt or those yogurt drinks, ice cream, he can't have those?" "No," I replied, "or Goldfish crackers or anything that contains milk."

"What will happen if he touches milk?" asked Ms. G, "We have lots of milk spills."

"He will get localized hives." They all seemed rather alarmed at this. I explained that they would need to wash the skin with soap and water. And observe him for other symptoms. Just getting on his skin wouldn't necessarily send him into anaphylaxis. I realize this may be the case for other children but in our case if it's not ingested it had never led us down an Epi pen path.

We covered much, much more about food allergies and Max's needs in order to keep him safe. By the end, Mrs. S. looked beaten down. Which made me more nervous. In hindsight, it has to be hard on teachers. The weight of responsibility for so many children's safety. To have a child who needs extra precautions must sometimes seem overwhelming. Especially when that child is allergic to something in every other child's lunch. I know how I felt when Max was first diagnosed "How am I going to do this?" She must in someways feel the same.

The extraordinary part was what happened when I got home. The school nurse called me. She wanted to know how I felt about the meeting. I relayed my nervousness and we went over the points we felt needed reinforced with Mrs. S. I felt I had found an ally.

It seems we covered everything to keep Max physically safe. But I am still worried about the emotional part. I wonder how much his food allergies will make him feel left out this year. I didn't feel I got into this as much during the meeting. Ah, well, it is a process.

I'm less nervous about the food allergy part now. My nerves today are probably more centered around everything other parents are nervous about. Will his teacher like him/understand where he is coming from? Will he get along with his classmates? Will he like it and embrace learning in a new environment?

I guess the worries never stop, no matter if your child has a food allergy or not.

Back to School

Whew! We are back from over two weeks in Wisconsin and I have less than a week to prepare for school. I have a meeting with Max's teachers tomorrow. So far I am very impressed with the food allergy awareness they have in place. I am expecting tomorrow to go smoothly, just don't want to forget to cover anything.

Back in May at our support group meeting, Maria Acebel spoke to our group about school safety. She has a website and training program for keeping kids safe at school. She's a wealth of infomation and has turned making every school safe for kids with food allergies her mission. I am taking her discussion points with me to tomorrow's meeting.

Angry at the Doughnuts - A Little Rant

When I dropped Max off at camp this morning I noticed the teacher giving one of the assistants a few boxes that highly resembled something you would get at a bakery. "Do those boxes contain cookies, doughnuts or something else I need to be concerned with." I asked.

"Oh yes, doughnuts, for a birthday celebration. I don't suppose Max can have those?"

Hmmm, let's think about that one.

I replied no and headed home to round up a cupcake to bring back to school for someone's birthday celebration.

Why, oh, why, must people bring "treats" for their children's birthday, I say again. I simmered all day and glared at the offending Mom with the doughnut box at pick-up.

I Need Four Hands This Week

I volunteered to help create an "Asia" themed set for Max's school. The kids will take a pretend flight to Asia and explore the Taj Mahal, the Great Wall of China, rice paddies, Japenese Sand Gardens. So this week I am literally helping to build the Taj Mahal. I volunteered to do the mosiacs on the building. What was I thinking!!??

In addition, you may have seen my previous posts about food for this event. Here and here. They took half my advice on the food and are limiting the food to two types of dishes per country (for a total of eight different types of food). I decided that no matter what I am still going to need to provide Max's food, just to be sure he is safe. So in the next few days I need to make Spring Rolls, Samoasas, Veggie Wontons and Pancit Noodles. Someone wanna come help me?

Multitude of Events Equals Multitudes of Substitutions

Okay, so I'm exaggerating but we do have a lot of outside the home events to attend this weekend. Today I have been running through the mental list of things I need to bake, buy or otherwise get together.

Here's the list:
Saturday afternoon birthday party: The mother is keeping it simple (Bless her!) She is serving fruit, juice and cookies. Note to self: Bake cookies

Saturday evening auction and dinner at Max's school, kids are going to onsite child care (only $30 after paying $80 last week for a sitter this is a steal.): They are serving the kids ice cream and were going to serve goldfish crackers but changed to teddy grahams. Note to self: Buy Tufutti Ice Cream (Chocolate) and send along own ice cream scooper (so my kids don't get cross-contaminated ice cream).

Sunday Newcomers Welcome Luncheon at our church: croissant sandwiches and sliced wraps (from Costco), potato salad and cole slaw (Safeway deli), brownie bites (Costco), Country Time lemonade and sparkling water. Glad she gave me a complete list but this requires I bring along complete lunches for Max and Owen. To make it simple I'll pack: Turkey wraps, Pillsbury crescent rolls (Note to self: buy Crescent Rolls), Carrot slaw (grated carrots) and the cookies I will have already baked.

Why the list? I titled this blog "Everyday with Food Allergies" because I wanted other people to see the preparation that happens for events that people without food allergies don't have to think twice about. I also want to say that a year ago I probably would have only done the birthday party and skipped the school dinner and church luncheon all together. But I can't keep us all shut away in a house. We need to build a community, make friends and get involved. Unfortunately this often involves events with food. So we will just need to learn to deal. Bring our own food. Watch carefully. And carry an Epi-pen (or two or three).

ACTUAL Letter to the teachers

So here is ultimately what I did send to Max's teachers. I'll have to address all my other issues differently. Namely the distribution of the life-threatening food allergy list.

Via email:

First off I am sorry my sons were so distracting at our committee meeting yesterday. It was hard for me to focus or perhaps I would have been able to bring up these issues while we were all still together.

I have been pondering the food for the Asia Trip since our meeting and I have a few thoughts. The way the event is structured now is for many people to bring various foods making for a pot luck of sorts. I think this leads to a host of logistical problems. Where and how is the food set up? What about utensils/dishes/napkins, etc.? Where do people sit to eat? I feel a pot luck leads to people standing in line to get food, children focusing more on eating than enjoying Asia and a lot of garbage to clean up. How do we control the crowd and the mess? I just fear a pot luck might overshadow the real purpose of the "Asia Trip" which is to explore Asia not feed everyone lunch.

Here is my idea: What if one or two foods were choosen for each country and many people asked to bring the same thing already sepearted in to bite sized portions. For example a small bite-sized samosa for India, Shredded colored cocoanut or Chinese crackers in a small cup for China. The food would then be kept at a "kiosk" near the set for each country so the children could enjoy a small "snack" in each country. This way they could easily distinguish which culinary delight belongs to which country and still be hungry for lunch later on.

I also have food allergy concerns regarding a pot luck which I feel could be minimized with the "kiosk" idea. But that is an issue we can discuss later.

Please see my ideas as my way of offering options and simplifying this wonderful event.

What do you think?

End transmission

Letter to Max's Teachers

To the teachers at my son's school:

First off I am sorry I had to bring my two children to the food committee meeting today. I know they are not the easiest children to bring somewhere and expect to be quiet. They were quite distracting especially to me. However, you did not choose the best time to hold a short meeting. Had you made it an hour later I could have left them with my husband.

Secondly, I don't feel the meeting went very well. I had wanted to insure at least a few safe food choices for my son. I am so tired of him being made to feel left out. The meeting was so scattered though and since only 3 out of the 13 volunteers showed up I don't feel I was able to make much of an impact. Also , I think the list of life-threatening allergies only really confused people as we are telling people they only need to really avoid peanuts and tree nuts even though things such as milk, eggs, strawberries and even white potatoes were listed as life-threatening. What is the point of distributing such a list unless you really want people to avoid all these items? (You also just singled out every child with a life-threatening food allergy by distributing their names and allergens to a number of people with their own agendas. I don't know how comfortable I am with that.)

I know you are asking people to label dishes but I want to point out a few things. People don't always know how to label a dish. For example, some part of the dish may need to be sauteed, the maker of the dish may do this in butter but forget to add that to the label. Or perhaps they use margarine in which case all the ingredients in the margarine should be included in the list. I will still look at the sea of food, labeled as it is, at this event and feel panic. My son will still only eat those items I bring. It is the only way I can assure his safety.

I don't know what I expected to be different. A pot luck is a pot luck. And with food allergies more than luck needs to be on your side. I guess at least I was assured that 3 out of his five allergens will not be present.

Lastly, to say that the food is only to give the kids a taste of Asia and that they will all be happy in the end because it is Pizza Friday that day and they all love pizza is the last disservice to my son who appears to be the only milk allergic child in the school or at least on the life-threatening list. He can't eat the "Taste of Asia" and he can't eat the pizza.

Why do I feel so frustrated with today?

A Rant (mainly) About a Cupcake

I'm sure you could look at this situation from the other mom's point of view but this is my blog and I'll rant if I want to.

Before school started Max's teacher and I talked about food allergies and birthday celebrations and she decided it would be best to just encourage parents to bring in fresh fruit for a celebration snack. I think this is great on many levels. Besides cutting down on the food allergy worries it keeps kids from loading up on sugar before lunch which is when birthday celebrations are scheduled. Just personally, I also don't know why food must always be the center of any celebration. Montessori does a lovely ceremony, involving the child walking around a lit candle the number of years he has been on earth to symbolize the sun going around the earth while the teacher talks about each year of the child's life. The child gets to be the center of attention and made to feel very special. Why add food to this?

So when on Friday, Max's teacher said another mom wanted to bring in cupcakes for her son's celebration (he was having a party on Sunday) I felt a little worried. Max's teacher gave her a recipe and strict instructions on which products and cross contamination. I still felt worried and called her Sunday.

Her son wasn't feeling well on Monday so the celebration was pushed to Tuesday. I finally got in contact with the mom Monday night. She was exasperated with the recipe. Here are some of her exasperations:

"The recipe looks so hard!"

"I don't have all the right ingredients."

"I'm not much of a baker."

"I'm sure every pan and bowl we have has had egg in it at some point."

"I didn't know someone could be allergic to eggs!"

"What do you feed him?" (When I told her he was also allergic to milk, peanuts and tree nuts)

(And my favorite) "My son just doesn't like fruit. Really. He just doesn't like it."

So I listened patiently and then did what she was really asking for. I let her off the hook. I told her to make whatever her son wanted and I would send something safe for Max. At which point she offered to make my son a fruit kabob! Come on, my kid is pretty good about his allergies but if everyone around him is eating cupcakes he's not going to be happy with a fruit kabob.

She gave the obligatory "I just don't want him to feel left out." which in return I gave the obligatory "Don't worry, this is our life and he is used to it. He hasn't known anything different." Blah, blah, blah. Why do I have to make other people feel good about my son's allergies when they want to go against the class rules and bring cupcakes because their son doesn't like fruit?

And another thing: When buying the usual (and only kind which were safe for us) chocolate chip cookies at Whole Foods today, I noticed the labeling was different. It now says they contain milk (even though I couldn't find milk in the ingredient list) AND it said it CONTAINED (not even MAY contain) trace amounts of peanut, tree nut and egg. Followed by good manufacturing practices used, yadda, yadda, yadda. This is completely different from previous labeling and it pissed me off.

AND ANOTHER THING! The person hosting our usual weekly afternoon playgroup sent out directions and indicated that she would be serving goldfish crackers and brownies as a snack. I emailed back that we wouldn't be coming. Somedays even I get tired of dealing with our allergies. And do we really need goldfish and brownies right before dinner?

Okay, done ranting.